When I was growing up in New York, one of my favorite excursions was to the New Jersey Science Center. I was a geeky kid (I asked for a microscope for Christmas when I was 10) and was thrilled by learning. The exhibit at the Science Center that most interested me and scared me was the Touch Tunnel. The Touch Tunnel was a pitch black labyrinth in which you crawled on your hands and knees, groping your way forward as the materials you tread on changed beneath you. My heart always began to flutter with anticipation as I waited my turn, but still I gathered my courage and always found my way out. That first glimpse of white light at the end of the tunnel, like a beacon, pulled me through and I remember how vivid the world seemed when I stepped out, my hair askew and knees red with rug burn.

The Touch Tunnel was meant to simulate blindness. As a way of helping children to understand on some small level how people without sight experience the physical world. I didn’t know at the time how intimately I would come to understand that in my adult life. EJ Scott, the love of my life, is going blind. He wasn’t born blind, and he didn’t lose it all at once in an accident. He has a rare genetic disease called Choroideremia. Essentially the proteins that protect his eyes from the sun are missing and the cells that create vision are dying. It begins peripherally and moves inward until total blindness. Right now EJ has less than 20 degrees of vision in each eye. If you can imagine looking down two paper towel rolls, you’ll get a sense of what his scope is.

EJ has found great strength in fundraising for a cure. As of now there is no treatment and this being a hereditary disease, not only does EJ suffer, but his brother and his nephew and in the future some of our descendants will lose their sight from it as well if no treatment is found. We try to spread awareness of Choroideremia, but raising funds is difficult because of its rarity. We have found that the crazier the stunt the better, and EJ is currently endeavoring to run 12 marathons in 2012 all blindfolded as the sun is so damaging to his eyes. It is this active role in finding a cure that keeps EJ positive.

HBO/Courtesy Everett Collection’

Deborah Ann Woll in character in “True Blood.”

As for me, I have learned what it is to be a compassionate caretaker, and what a challenge that can be at times. EJ is incredibly independent but still there are things I must help him with and these will only increase as his sight worsens. There are things I expected to deal with, like when he bumps into fire hydrants (we joke about buying him shin guards, but it might actually be a good idea), things I never thought about (at a conference for spouses of the visually impaired I was taught how to explain where food is on a plate using a clock face. Your meat is at 3, your potato at 7 and your vegetable at 10 for example), and some experiences I dreaded.

Principally among those is the experience of grief. Vision loss is like any other major loss in one’s life and you go through the same stages. EJ is further along in his processing than I am as he has been living with it for longer. So my challenge is to support him in whatever stage he is, whilst giving myself permission to grieve as I need. As strong as he is, there are always moments when I feel the lump in my throat start to grow at the thought that one day he will never see my face again. That the only person in my life who I desperately need to see me, won’t. But I take solace in the fact that I know seeing isn’t done only with the eyes but with the heart as well. Perhaps he will teach us both how to love and see deeper than we ever knew possible. I realize that my beacon, that light at the end of the touch tunnel, is EJ and I hope I can be the same for him.

Deborah Ann Woll is an actress in the HBO series, “True Blood.” Her longtime boyfriend, EJ Scott, was born with Choroideremia and is working to raise awareness and funding with the 12 Marathons in 12 Months Campaign. You can track his marathons on Twitter:@12marathons2012

About Speakeasy

Speakeasy is a blog covering media, entertainment, celebrity and the arts. The publication is produced by Barbara Chai and Jonathan Welsh with contributions from the Wall Street Journal staff and others. Write to us at speakeasy@wsj.com or follow us on Twitter at @WSJSpeakeasy or individually @barbarachai.